Explores the political forces underlying shifts in thinking about the respective influence of heredity and environment in shaping human behavior, and the feasibility and morality of eugenics.

By the 1950s, eugenics had lost its scientific status; it now belonged to the context rather than to the content of science. Interest in the subject was also at low ebb. But that situation would soon change dramatically. Indeed, in an essay-review published in 1993, Philip Pauly commented that a “eugenics industry” had come to rival the “Darwin industry” in importance, although the former seemed less integrated than the latter. Since then, the pace of publication on eugenics, including American eugenics, (...) has only accelerated, while the field has become even more fractured, moving in multiple and even contradictory directions. This essay explores the trajectory of work on the history of American eugenics since interest in the subject revived in the 1960s, noting trends and also fractures. The latter are seen to result partly from the fact that professional historians no longer own the subject, which has attracted the interest of scholars in several other disciplines as well as scientists, political activists, and journalists, and also from the fact that the history of eugenics has almost always been policy-oriented. Historians’ desire to be policy-relevant and at the same time attentive to context, complexity, and contingency has generated tensions at several levels: within individuals, among historians, and between professional historians and others who also engage with the history of eugenics. That these tensions are resolved differently by different authors and even by the same authors at different times helps explain why the fragmentation that Pauly noted is not likely to be overcome anytime soon. (shrink)

The ArgumentWhat are the aims of genetic services? Do any of these aims deserve to be labeled “eugenics”? Answers to these strenuously debated questions depend not just on the facts about genetic testing and screening but also on what is understood by “eugenics,” a term with multiple and contested meanings. This paper explores the impact of efforts to label genetic services “eugenics” and argues that attempts to protect against the charge have seriously distorted discussion about their purpose. Following Ruth Chadwick, (...) I argue that the existence of genetic services presupposes that genetic disease is undesirable and that means should be offered to reduce it. I further argue that the economic cost of such disease is one reason why governments and health care providers deem such services worthwhile. The important question is not whether such cost considerations constitute “eugenics,” but whether they foster practices that are undesirable and, if so, what to do about them. The wielding of the term “eugenics” as a weapon in a war over the expansion of genetic services, conjoined with efforts to dissociate such services from the abortion controversy, has produced a rhetoric about the aims of these services that is increasingly divorced from reality. Candor about these aims is a sine qua non of any useful debate over the legitimacy of the methods used to advance them. (shrink)

In recent years, as newborn screening has expanded to include conditions for which treatment is questionable, new rationales for screening have proliferated. One such rationale is the potential reproductive benefit to parents from the detection of a genetic condition or carrier status in infants. An unanticipated consequence of invoking knowledge of reproductive risk as a major benefit of screening has been to open newborn screening to the charge that it constitutes state‐sanctioned eugenics. Thus, an endeavor that had been viewed as (...) the converse of state programs of selective breeding has come to be seen in some quarters as yet another of its incarnations. The result has been serious and self‐inflected harm to the reputation of newborn screening programs. (shrink)

In this paper, we show that the question of the relative importance of innate characteristics and institutional arrangements in explaining human difference was vehemently contested in Britain during the first half of the nineteenth century. Thus Sir Francis Galton’s work of the 1860s should be seen as an intervention in a pre-existing controversy. The central figure in these earlier debates—as well as many later ones—was the philosopher and economist John Stuart Mill. In Mill’s view, human nature was fundamentally shaped by (...) history and culture, factors that accounted for most mental and behavioral differences between men and women and among people of different classes, nationalities, and races. Indeed, Mill’s whole program of social reform depended on the assumption that human differences were not fixed by nature. To identify the leading figures in these disputes about difference and the concrete context in which they occurred, we explore three debates in which Mill played a key role: over the capacities and rights of women, the viability of peasant proprietorship in India and Ireland, and the status of black labor in Jamaica. The last two draw our attention to the important colonial context of the nature–nurture debate. We also show that ideas that for us seem of a piece were not always linked for these earlier thinkers, nor did views on innateness necessarily have the political correlates that we now take for granted. (shrink)

Newborn screening for the genetic disease phenylketonuria (PKU) is generally considered the greatest success story of applied human genetics. Even those generally skeptical of the value of genetic testing often comment enthusiastically on this program. In fact, PKU screening has been plagued with serious problems since its inception in the early 1960s. This essay describes some of these difficulties and asks what lessons they hold for other screening programs. It also argues that realism in our assessment of such programs requires (...) that we pay greater attention to the concrete experience of families. How screening should work in theory is of less importance than how it does work in practice. (shrink)

The bitterness and protracted character of the biometrician–Mendelian debate has long aroused the interest of historians of biology. In this paper, we focus on another and much less discussed facet of the controversy: competing interpretations of the inheritance of mental defect. Today, the views of the early Mendelians, such as Charles B. Davenport and Henry H. Goddard, are universally seen to be mistaken. Some historians assume that the Mendelians' errors were exposed by advances in the science of genetics. Others believe (...) that their mistakes could have been identified by contemporaries. Neither interpretation takes account of the fact that the lapses for which the Mendelian eugenicists are now notorious were, in fact, mostly identified at the time by the biometricians David Heron and Karl Pearson. In this paper we ask why their objections had so little impact. We think the answer illustrates an important general point about the social prerequisites for effective scientific critique. (shrink)

This book from the Center for Bioethics and Human Dignity provides a faith-based evaluation of recent technologies and trends in bioethics--including the current debate surrounding stem cell research. Fifteen noted scholars and medical practitioners discuss some of today's new and controversial work in biomedicine--xenotransplantation, artificial intelligence, cybernetics, and more--and evaluate from a Christian perspective both the science and the ethical questions it raises. Designed to orient general readers to the current state of biomedical research, Cutting-Edge Bioethics is must reading for (...) anyone wishing to confront and wrestle with the challenging moral issues posed by this ever-advancing field. (shrink)

Turing’s analysis of computability has recently been challenged; it is claimed that it is circular to analyse the intuitive concept of numerical computability in terms of the Turing machine. This claim threatens the view, canonical in mathematics and cognitive science, that the concept of a systematic procedure or algorithm is to be explicated by reference to the capacities of Turing machines. We defend Turing’s analysis against the challenge of ‘deviant encodings’.Keywords: Systematic procedure; Turing machine; Church–Turing thesis; Deviant encoding; Acceptable encoding; (...) Turing’s analysis of computability; Turing’s Notational Thesis. (shrink)

v. 1. Religion and the powers of the common life -- v. 2. The spirit and the modern authorities -- v. 3. Christ and the dominions of civilization -- v. 4. Globalization and grace.

In this article, the authors explore the impact of a potential future regulatory decision by FDA whether or not to continue its enforcement discretion policy allowing physicians to perform, and stool banks to sell, stool product for fecal microbiota transplantation as a treatment for recurrent Clostridium Difficile infection without an Investigative New Drug application. The paper looks at the Agency's regulatory options in light of the current gut microbiota based products that are in the FDA pipeline for drug approval and (...) the potential impact and repercussions of their approval on FDA action. In laying out FDA's options we consider the implications of market exclusivity and off-label use of newly approved drugs. Ultimately, we explore the potential impact of FDA's decision on patients, research, and innovation. (shrink)

BackgroundThis study aimed to determine what, how, and under what circumstances individual-focused interventions improve well-being and decrease burnout for critical care healthcare professionals.MethodThis realist approach, expert opinion interview, was guided by the Realist And Meta-narrative Evidence Synthesis: Evolving Standards II guidelines. Semi-structured interviews with critical care experts were conducted to ascertain current and nuanced information on a set of pre-defined individual interventions summarized from a previous umbrella review. The data were appraised, and relationships between context, mechanisms, and outcomes were extracted, (...) which created theory prepositions that refined the initial program theory.ResultsA total of 21 critical care experts were individually interviewed. By understanding the complex interplay between organizational and personal factors that influenced intervention uptake, it was possible to decipher the most likely implementable intervention for critical care healthcare professionals. The expert recommendation suggested that interventions should be evidence-based, accessible, inclusive, and collaborative, and promote knowledge and skill development. Unique mechanisms were also required to achieve the positive effects of the intervention due to the presence of contextual factors within critical care settings. Mechanisms identified in this study included the facilitation of self-awareness, self-regulation, autonomy, collaboration, acceptance, and inclusion.ConclusionThis validation of a theoretical understanding of intervention that addressed well-being and burnout in critical care healthcare professionals by expert opinion demonstrated essential mechanisms and contextual factors to consider when designing and implementing interventions. Future research would benefit by piloting individual interventions and integrating these new theoretical findings to understand better their effectiveness for future translation into the “real-world” setting. (shrink)

Over twenty years have passed since JLME published “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain.” This article revisits the conclusions drawn in that piece and explores what we have learned in the last two decades regarding the experience of men and women who have chronic pain and whether women continue to be treated less aggressively for their pain than men.

The Repugnant Conclusion served an important purpose in catalyzing and inspiring the pioneering stage of population ethics research. We believe, however, that the Repugnant Conclusion now receives too much focus. Avoiding the Repugnant Conclusion should no longer be the central goal driving population ethics research, despite its importance to the fundamental accomplishments of the existing literature.

This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be permitted (...) access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

Fertility preservation has become more common for various populations, including oncology patients, transgender individuals, and women who are concerned about age-related infertility. Little attention has been paid to fertility preservation for patients with differences/disorders of sex development (DSD). Our goal in this article is to address specific ethical considerations that are unique to this patient population. To this end, we present a hypothetical DSD case. We then explore ethical considerations related to patient’s age, risk of cancer, concern about genetic transmission (...) of a DSD condition to children, co-occurring gender dysphoria, and access to experimental fertility preservation procedures. Given the limitations of current technologies, we recommend offering fertility preservation to individuals living with DSD using an informed decision-making approach that instills realistic expectations and minimizes the potential for false hope. Finally, we conclude with practical recommendations for this case based on the ethical considerations. (shrink)

ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be (...) permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

DBS Think Tank IX was held on August 25–27, 2021 in Orlando FL with US based participants largely in person and overseas participants joining by video conferencing technology. The DBS Think Tank was founded in 2012 and provides an open platform where clinicians, engineers and researchers can freely discuss current and emerging deep brain stimulation technologies as well as the logistical and ethical issues facing the field. The consensus among the DBS Think Tank IX speakers was that DBS expanded in (...) its scope and has been applied to multiple brain disorders in an effort to modulate neural circuitry. After collectively sharing our experiences, it was estimated that globally more than 230,000 DBS devices have been implanted for neurological and neuropsychiatric disorders. As such, this year’s meeting was focused on advances in the following areas: neuromodulation in Europe, Asia and Australia; cutting-edge technologies, neuroethics, interventional psychiatry, adaptive DBS, neuromodulation for pain, network neuromodulation for epilepsy and neuromodulation for traumatic brain injury. (shrink)